When The “Difficult Patient” Is You

🖨️ Print post

When doctors are stymied by a patient’s case, they often label the patient “difficult.” What can you do when that label has been put on you? Dr. Cynthia Li, author of “Brave New Medicine,” understands where you’re coming from. Because it happened to her, too. A functional medicine physician, she once was labeled “difficult” while dealing with a debilitating auto-immune condition.

Today, she describes her own personal journey to health, and how she had to shift her paradigm from one of relying on external authorities and rationality, to moving toward embracing intuition, instinct, and ancestral wisdom. She discusses the importance of “not trying harder but trying differently.” And how, for her, true healing came as she pursued connecting with herself on a profound level.

—

Listen to the podcast here:

When The “Difficult Patient” Is You

Episode Transcript

Within the below transcript the bolded text is Hilda Labrada Gore and the regular text is Cynthia Li.

Pursuing health can take a lot of time and energy. Sometimes after knocking on a lot of doors, a person can still come up empty. Their health concern is completely puzzling from every angle. When it stumps the doctors, the patient is often labeled difficult. What to do if that label is put on you? This is Episode 315. Our guest is Dr. Cynthia Li, the author of Brave New Medicine. Cynthia understands both sides intimately. She is a Functional Medicine Physician who is trying to heal her own challenging autoimmune condition when she herself was described as difficult.

She explains her own personal journey to health, how she had to shift her own paradigm from one of relying on external authorities and rationality to moving toward embracing intuition, instinct and ancestral wisdom. She discusses the importance of not trying harder but trying differently. She goes over how it is that she came to see that life and medicine should not be approached with a paint by numbers mentality. Instead, she reminds us that to see what is true. We must pursue the deep interpersonal connection to ourselves. Cynthia talks about how she began to explore the impact on her health of the air she was breathing, the food she was eating and even the thoughts she was thinking.

—

Welcome to the show, Cynthia.

Thank you so much for having me.

You mentioned in your book, the most difficult patient. Can you describe her case, the most difficult patient you encountered?

She was in her early 30s, a new mother and was reportedly healthy until that point. A few months after she had her baby, she began having symptoms, palpitations, difficulty sleeping, weight loss and initially ascribed it to postpartum stuff. I had seen her as well and thought, “It was postpartum stuff. You’re tired. You’re a new mom.” She came back and she was diagnosed with an autoimmune thyroid condition. Most of the time in the postpartum period, these kinds of autoimmune conditions resolve. A year later she came back, her labs had normalized, but said she wasn’t feeling well. Her symptoms continued to escalate until she was quite unwell and was housebound for a long time, but she kept coming back and her labs kept showing up normal.

What do most doctors do when they encounter someone like this? What are the options if it seems normal? What do you do?

I’m trained as an internist, which is a specialist in chronic conditions for adults. I’ve had a lot of “difficult” patients like that. They come with a lot of symptoms that we can’t explain through labs. There are a lot of screening labs that I can order. That’s the initial step and then a physical exam as well. Her physical exam after the thyroid stuff resolved was pretty unremarkable. Her vital signs were normal. Usually, in cases like that, we give various medications to help ease their symptoms.

You’re going after the symptoms not the root cause, because you can’t determine what that is. What made this patient’s case so difficult to resolve?

Not only that it was difficult to resolve, but that the symptoms continued to escalate and there was nothing found on anything. What made it difficult to resolve was that this patient was me. What happens often is doctors will refer the patients onto somebody else or at some point, things come to a head and the patient is frustrated with the doctor, the doctor is frustrated with the patient. “Let’s either try a specialist, a psychiatrist, a neurologist, an immunologist, whoever it is that might be able to help guide this patient in a different way.” Sending the patient to another primary care doctor. In this case, I was stuck with myself.

Did you label yourself a difficult patient? Is that a thing in medical circles?

I didn’t overtly label myself, but I remember the moment when I was staring my thyroid doctor in the face saying, “I still have thyroid symptoms. In fact, they’re worsening.” I could see it in his eyes that, “I’ve been that patient that I dread, that all doctors dread. I’m causing him trouble,” but because I had been trained that way, it was a real existential crisis for me because I didn’t fit my truths of what reality was. It took me a long time to crack that because I kept questioning myself, “It’s just my symptoms. It’s just in my head. I’ve got to will myself past this.” The objective data doesn’t lie. That’s what I was struggling with.

I bet a lot of people can identify with this label that either they put on themselves or that the medical system puts on them because it’s not always black and white. The problem isn’t black and white. As Sally Fallon Morrell likes to say, “Medicine isn’t always paint by numbers. You have X thing. We give you this treatment and connect the dots.” It’s not always like that at all.

The way that we’re trained in conventional Western medicine is quite black and white. For diabetes, if you have a certain number and you’re on one side, “Your pre-diabetes,” and you’re on another side, “You’ve got diabetes and therefore we start medication.” It does feel black and white and yet life and illness are not black and white. The term the difficult patient is unfortunately used. It’s like, “This was a difficult patient.” As doctors, we know what that means. For different reasons, there might be challenging personalities, drug-seeking behavior and these patients who keep coming back and demanding things and challenging our expertise. That’s how it feels. It is like they’re challenging us and yet we’re the ones who are trained.

It would be better if they could say it’s a difficult case or a difficult situation.

That’s what it is. Having been on the other side of the bedside, I understand even that we label “drug-seeking behavior” these patients are suffering. Because we are not addressing their root causes, they keep coming back. Our experience of that is, “They’re seeking these quick fixes.” There are controlled substances or they’re using them in ways that aren’t right the way that they ought to be used. It does feel challenging, but it’s not the person who’s challenging. It’s the fact that we don’t have answers. As a doctor, the way that we’re trained is that we need to find that solution. There’s some kind of magic solution and we’re still looking oftentimes for one cause and one effect. What is that or what is the drug? What is the procedure or what is that thing that will help alleviate the suffering?I’ll speak for myself, but I also know a lot of friends who are doctors. There’s a lot of pressure to figure that out. I feel like both sides are well-meaning and well-intentioned and then we come to this head because we’re all frustrated and grieving, but there’s no place for the grief to go. There’s no way for us to express grief. Anytime we cannot come up with that solution or we cannot avert death in the most extreme cases, it’s a medical failure. That’s completely not aligned with how life and life cycles are either. There are so many areas that are culminating in this encounter of the difficult patient.

Here you were in a difficult situation as both a doctor and a patient. What did you do since there weren’t any clear-cut answers?

It took me about two years of remaining in Missouri. I was bed-bound for about six months and then largely housebound for the greater part of a decade. During the first two years of that, I was waiting for stuff to resolve because I didn’t have any answers. At one point, when my marriage was on its last threads holding us together, I had two young kids at home. I had not been able to work. I felt like I was going to lose everything. It was a wake-up call like, “Don’t try harder. Don’t wait longer. I need to try differently.” There was a moment, but it was breaking down to the last straw that I realized, “I have a choice, either I try differently or this is more of the same.”

That must have been challenging too, because you had conventional training. Somehow you had to pivot in an entirely new direction.

It was not an enlightening moment. It was that I was desperate.

What did you do first?

Chronic vertigo was one of my symptoms as well as severe debilitating exhaustion. It was difficult to even for me to read or to be on a screen. It wasn’t like I could suddenly do research on my own. I saw an acupuncturist. I tried a few before I found one that resonated with me. His name was Bob Levine. With a lot of resistance and ironically, my family’s heritage, I’m Chinese and I was highly skeptical of anything that was “alternative” or holistic, even though it had been rooted in thousands of years or hundreds of years, at least this paradigm, of tradition.I went. It was this Jewish, Buddhist man who ironically took me back into my own heritage and opened me up to that. I responded strongly. It wasn’t like I suddenly became better. I had a lot of withdrawal symptoms. He would put in a couple of needles and I would have severe withdrawal symptoms. I was of my symptoms getting worse. He explained, “This is release. It’s like any other withdrawal. You’ve got to release some of the trauma that’s been stored in your body. Even before you got sick, you were storing these things and suppressing things in your body.” I began to learn about a holistic ecological paradigm way of looking at my body through him. He was traditional Chinese medicine trained, but I was using my scientific background to understand what was happening.

Acupuncture is one thing that you tried, but I understand you started walking bravely in a lot of new directions. Talk to us about some of the other protocols or healing modalities that you started to apply to your life and to your family’s life as well.

It was very stepwise. What Bob helped me get to was a place where I could sleep a little bit better. It wasn’t great. Even now, I can tell when my body’s out of balance because the first thing that goes is my sleep even when I was younger. Sleep was a little bit back on track and then my equilibrium was a little bit better, so I was able to start reading. I was focused on researching. I dove into the ecological paradigm of environmental health stuff, understanding how chemicals, the air we breathe, the food we eat. All of these things affect the way our genes express, the way that our neurons are wired. The key to that is our thoughts and our emotions. It’s debatable because it’s been hard to define how you measure a thought with our scans and whatever technologies we have, but somewhere between 15,000 to 80,000 thoughts a day.

All of those thoughts are communicating to our whole body, to all the cells, whether we should express an emotion or hold it in, how we’re perceiving a difficult conflict or traumatic situation. That’s going to affect every bit of our body.

What I started calculating or imagining was if our conscious mind is just a small percentage. It’s somewhere between 5% to 10% of the total mind. The vast majority is subconscious. What is happening with these circuits in our bodies, because if we’ve got 15,000 to 80,000 conscious thoughts a day, then the subconscious stuff, we’re feeding all the time. At the time, I did not know what to even do with that because my mind was all over the place. I had no agency over my physiology, that’s how it felt. Being aware of that was humbling. I was like, “What patterns have been established for a long time that got triggered by these more recent insults,” whether it was the pregnancy hormones and then there were some infections that I have had and then, “Was it the mercury in my fillings?”Slowly, over time, what was happening was I was going from conventionally trained doctor to integrative into something called functional medicine. Functional medicine, taking the lifestyle medicine of integrative medicine but then also looking at root causes. The symptoms, the conditions, the diagnoses that we have are leaves on the tree and then there are all these factors that are being taken up at the roots. They manifest in different people depending on their genetic predisposition and on their personality or their constitution. They manifest in different ways.

Things get complex. It’s like, “Is it this? Is it that? Do I eat gluten?” It can get confusing. What’s beautiful about this paradigm is that if we address the root causes, then all these seemingly disparate conditions on the roots can heal at the same time. You asked about my family as well. One of the things that my family’s journey took me to was Weston A. Price’s work. My older daughter who was five, I had taken her to the dentist. We weren’t a no sugar, all whole foods family, but we were fairly “healthy.” She had good teeth hygiene. We made sure that she brushes her teeth every night before bed and ideally in the morning.

When we took her to the dentist for her first visit, we were shocked to find that she had several cavities. I began to research and found Dr. Price’s work. There are ancestral diets. Look at what happened with these people. It wasn’t just hygiene and cavities. It was a facial structure. In conventional training, we are taught not nearly enough, but we are taught briefly that the structure of the body, the form informs the function. What was happening with my body was a complete dysfunction. I started thinking about form and structure and I was looking at my daughter. From Dr. Price’s work, we did completely revamp not only what we ate, but how we cooked, how we prepared the foods.

This was another way in which it reconnected me with my ancestors as well. From that also, I started researching and then I found this connection with gluten. I had an autoimmune response to gluten, so did my daughter. That was a big opening in so many different ways. It connected me to the land in a way that environmental health science didn’t. I was thinking, with environmental health, it connected me, but in a theoretical and a mechanical way like, “This is what we need to do.” Formulaic. Dr. Price’s stuff took me right back to like, “I need to get my hands in the soil.” We started a garden in our backyard. We were living in this tiny backyard in San Francisco. We had a little garden bed. It was restorative in the root cause sense in a way that I hadn’t fully appreciated.

What you’re saying resonates, Cynthia, because we at the Weston A. Price Foundation are about food farming and the healing arts. We understand that to be well. It takes more than the food we eat. We’re more than that. Dr. Price also observed how much time the indigenous cultures were outside and how they were in the community and all of these factors. It makes me happy to hear you articulate this in such a beautiful way because people need to appreciate that there may be a way to take their difficult situation and approach the healing journey a little differently.

 

Now that I’ve been working with patients for several years in this paradigm, I’m seeing there are so many people who are eating the “the perfect diet.” The perfect diet doesn’t exist. We wish it did because it would make things simpler. They’re eating good, wholesome, nutrient-dense diets. What’s missing? It’s easy to prescribe a supplement to heal the gut more, but I feel like they’re temporizing measures unless these deeper hows can be addressed. How are you living your life? How are you letting go of things that you need to let go of? How are you connecting with your body when you’re eating? How are you connecting to the food? We tend to get prescriptive about things. The mind-body piece is the part that is the hardest because we have to go within ourselves. Most of the time, that’s the scariest part.

You didn’t go there yourself, did you?

No way. For me, I was thinking of it as physical like, “My body is so uncomfortable. That’s the last place I want to go.” Much of it was intertwined with emotions and traumas. I don’t even like to label them traumas anymore because they’re challenges. If we ignore them, they come back. They need to be released in some way.

It’s like a Whack-A-Mole at the carnival or at the fun land at the beach. You knock it down in one spot, it’s going to pop up somewhere else.

I did that for a long time. I did that for most of my life, but I didn’t realize it because as a kid, you develop certain coping skills to survive, but many of them, at least for myself, weren’t maladaptive. At some point in my early adulthood, my system cracked. I couldn’t hold everything in anymore.

Cynthia, do you take what you’ve learned? You said you are a functional medicine practitioner. You do take it to your patients and try to address their healing in a different way.

I started my private practice several years ago. It evolves as I evolve. There was another thread that I write about in my book, but I explore it. It’s just the beginning of the exploration. It was the role of intuition. I was going to call it intuitive medicine, but it wasn’t. That’s not what it was in the beginning. It was intuition. That’s tapping into yourself. The other piece about intuition is embracing mystery, which is completely opposite of what the analytical mind wants to know definitively. It’s a strange duality that somehow comes together though. It’s like you have this one part of living your life and also thinking.

We can say it’s based on the right brain, but a lot of the signals are coming from the heart and from the gut sending things up to the brain to be able to interpret them. The simplified way is you’ve got a right brain and better-left brain, the left brain is analytical, the right brain’s intuitive and spatial. You bring them together. We have two eyes to see deeper and broader. What happens when we employ both sides of our minds to looking at a patient, whether it’s myself or somebody else. Can I see what is more true? The left brain wants to be right. The heart is not about being right. It’s not an ego thing. It’s like, “Can I see what is true in front of me?”I use those together now in my practice. I practiced on myself a lot with my health. What happened when I broke out into integrating functional medicine suddenly was, I went from no tools to infinite numbers of tools. Talk about diets, how many different diets. Not only that, your body changes. You need different things at different times. How do you know what to do? A lot of it was because of that question of not knowing and not having the analytical data to tell you were to go into intuition. That one was taking me out into a different experience of life. I met that with a lot of resistance, a lot of skepticism and fear, but now it helps me.

What I realized in my training was we’re good at ruling things out. We do a lot of tests to rule out the most ominous diagnoses. It’s like, “Thank God you don’t have cancer. You don’t have some full-on, complicated autoimmune condition, but then what do we do with it?” What the intuitive piece has helped me do and taught me is how do we rule things in much more quickly? It feels efficient. My doctor is very much about what is effective and efficient. That’s been a piece of my healing journey that has been completely unexpected.

It reminds me of when I was studying with the Institute for Integrative Nutrition to become a health coach, they said, “Don’t tell your clients what to do because they already know.” It’s like there’s a sense in which we all need to develop that intuitive deep listening to our bodies and our spirits and our minds so we can go there because the answer isn’t necessarily outside of us.

This is through my Qigong practice. Qigong is embodied consciousness practice that is rooted in ancient Chinese wisdom. One of the things that I learned through that is how healing and awakening our consciousness, awakening to greater trues of how life is and what we’re here for. They happen hand in hand. They’re like two feet marching along. When we heal, we awaken to ourselves and to the world outside of ourselves. When we are awakening, we heal. They happen even a side effect, even if we’re not seeking one or the other. It’s been powerful to do that.

 

What happens often is that because we’re in a pit, we need to seek out people like a health coach or like my acupuncturist or a functional medicine doctor or a nutritionist and that’s fine. Healing and awakening are solitary journeys that cannot be done alone. Both parts of those are challenging when you’re in a pit. My journey is mine to do. At the same time, I cannot do it by myself. We also heal in the community. Sometimes, I do have a lot of patients who are isolated. During COVID, it’s challenging. I, myself at my pit felt very isolated as well. Even in those moments though, we’re connected if we can connect to nature. We can connect even to people that we’re not directly in the community. We can connect to our ancestors who have passed before us. Even defining what connection is has changed in my journey. What I work with my patients with is, you were talking about empowerment and self-empowerment is one of the fundamental ingredients for healing. I’m happy to shepherd you on this, but don’t give me all of your power. It’s yours to reclaim.

I hope these words sink into each individual’s heart who’s reading. It is a challenge and it’s scary and it’s the unknown, but we don’t have to walk it alone, especially in light of what you said. We have connections. This has been a profound conversation, Cynthia. I have one more question to pose to you. This might be complicated because you have a holistic approach. If the readers could do one thing to improve their health, what would you recommend that they do?

It changes, based on my personal journey. The one thing I wish I had done earlier and deeper was my practice and wisdom healing Qigong. We cannot heal something we’re not connected to. I did not realize how disconnected my mind was from my body. Once we have that fundamental piece, everything, like the food that we eat becomes transformed. It’s hard for me to pinpoint one thing because that, together with the food piece, went hand in hand.

In my book, I talk about it separately. In integrative medicine, we talk about it separately, but in lived experience, they went hand in hand. In both situations, I feel like I am eating. I’m harnessing energy from the Earth, from the sun, from all the cycles. I’m like playing with nature’s cycles when I eat. When I do qigong, I say I’m eating the source of energy. They’re wound and bound together. I was excited to be invited to this show. I’ve been doing a lot fewer podcasts lately, being more selective with my time and energy. Dr. Price’s work and also the work of the foundation were essential to my healing as well.

Thank you for including us, Cynthia, in your life. We’re feeling the positive energy from this conversation and our connection. We look forward to talking to you again sometime.

Thank you so much for having me. It’s been a real pleasure.

About Cynthia Li

🖨️ Print post